Back on the merry-go-round, or just caffeine?

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dornole

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I was going to ask the same as Mister James. If the shortness of breath gets worse when lying down perhaps that could be mitral stenosis causing pulmonary edema which is what I had. Did they do an echo? I am so sorry you are feeling short of breath. For what it’s worth I had NO edema in my legs but I sure had edema and pulmonary hypertension in my lungs. They took a ridiculous amount of fluid of me in the hospital under lasix.
 

Protimenow

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Interesting.

I had an echocardiogram in April, before I started getting short of breath.

When I was in the hospital in late December, my heart was monitored 24/7. When I had the angiogram, they had me on even MORE leads.

I saw my electrocardiologist on 12/30, and the EKG didn't show much to worry about - but the pacemaker may have covered up most rhythm issues.

I don't know if I can have a relatively normal EKG if I was having Mitral valve problems. I expect to be seeing a pulmonologist some time in the next few weeks (if there's a cancellation and they can fit me in), and this specialist might try to rule out Mitral valve issues.

Thanks for the question - I hope to get an answer soon.
 

dornole

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My EKG was completely normal when I was in severe mitral stenosis and coughing up blood. I know because I was such an innocent at that time, that when the urgent care guy said go to the hospital and get an echocardiogram right away, I went there and said I’m supposed to get an EKG. Which they did and I went home but they called back in 20 mins after they got the order and told me to come back for an echo. Hey what did I know? Lol
 

dornole

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I will say that the SoB while lying down was dramatically worse than seated and I have read that this is a common symptom of mitral stenosis. Good luck I hope they can get you sorted out. No fun.
 

Mister_James

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Get an echo not EKG.
Echo looks at the heart, chambers, valves, wall thickness, blood flow.
EKG looks at electric signals.

You definitely need an echo.
 

Protimenow

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My SoB isn't worse when I'm laying down.

I saw a Pulmonologist on Monday. He took a history, he'll be reviewing the echo that I had in April. He'll review my other things in my history at the two hospitals I was admitted to in March, April, the end of May, and late last month.

My cardiologist didn't think this was a cardiac issue.
The pulmonologist thinks that it is.

Maybe when they stop fingerpointing, this will all be sorted out.

(The classic, recent, examples of fingerpointing happen when you install software or a peripheral, and things stop working. The software maker points fingers at the computer. The computer manufacturer points fingers at the software. Neither has a good answer. )
 

Protimenow

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It's been nearly two weeks since I visited the pulmonologist. Telling me that 'I'll be reviewing your records and get back to you in a few days' was untrue - he may have gotten busy and forgot about me, he may give the same line of horse manure to all his patients - I don't know. I'll call his office tomorrow (Monday) and see if he's come up with anything.

I may (it's on my calendar) be seeing my cardiologist tomorrow - if so, I'll ask about an echo. I'm scheduled for a holter in a few weeks. I continue to suffer with SoB -- even when I'm sitting (but I may just be looking for it to happen). Although my pacemaker is set to 70 bpm, my smart watch shows drops into the 50s and below - probably because an arrhythmia is throwing it off.

In any case, I'm still an unwilling passenger on that damned merry go round (and it's feeling a lot more like a roller coaster).

Thanks to everyone for the advice. I agree that an echo is probably the way to proceed.
 

pellicle

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My electrophysiologist directed me to take a magnesium and take my verapamil early.

This morning, I still had the arrhythmia - but not quite as badly.
Cold be that it's working but just needs time. Myself I never have caffeine at night.

Coffee in the mornings
Brandy* in the evenings

*{or red wine, beer, bourbon, scotch, gin...}
 

Protimenow

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This is getting even more interestinig:

I've been suffering shortness of breath for about two months.

At the end of December, I had an angiogram. My doctor told me today that my coronary arteries were 'wide open - like a 20 year old.' I'm having persistent SVT (or PVC) - I can't remember which.

I saw a pulmonologist a few weeks ago - he didn't think my problem was respiratory.

My cardiologist listened to my lungs - I can take deep breaths, and the lungs seemed to fill well, and there were no bad sounds.

A few hours ago, I stepped on a box and ripped some skin off the bottom of my foot. I was able to get to the bathroom to bandage it and apply pressure to stop the bleeding.

The blood on the floor was dark purple, indicating that my blood wasn't getting oxygenated. My pullse oxygen consistently reports SpO2 in the high 90%.

So what's going on? Can I maybe have a hematologic issue that prevents oxygenation?

Can this issue (if there IS one) be the reason that my Coag-Sense meter reports an INR that is usually lower than the XS and labs?

I sent a message to my PCP. I'll have to see where I go from here.

To quote a line from Gray's Anatomy 'the carousel keeps turning.'

In case any of you are curious, I'll try to check in later to report on the next steps in this journey.
 

Protimenow

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Thanks, Rich01. When I was briefly in the hospital last month, Test results were within range.

I'll see what my PCP has to say about this,
 

Protimenow

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I checked 'Dr. Internet', and he (she?) said that I probably hit a vein when I cut my foot (I peeled off a big hunk of skin), and purple, unoxygenated, blood is, indeed, purple.

I was concerned because I hadn't seen this before.

Aside from this cut, it seems to be normal.

This, of course, still doesn't answer the shortness of breath issue, but it DOES appear that my blood remains normal.
 

ATHENS1964

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I checked 'Dr. Internet', and he (she?) said that I probably hit a vein when I cut my foot (I peeled off a big hunk of skin), and purple, unoxygenated, blood is, indeed, purple.

I was concerned because I hadn't seen this before.

Aside from this cut, it seems to be normal.

This, of course, still doesn't answer the shortness of breath issue, but it DOES appear that my blood remains normal.
Does humidity affect you? Check the weather and when it catches you.
 

Protimenow

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Another update:

The thing on my heel healed.

My shortness of breath mostly resolved - I think it was directly related to a Crystal Light and generic Iced Tea with Lemonade powder that I was drinking. I still get a little short of breath, but nothing like before.

I just had a 24 hour holter study. It showed that I was having SVCs 7% of the time - and it used to be as high as 12%. The doctor said that I should have a trans-septal ablation. He was thinking about doing it 2 weeks or so from now, once he gets the approval.

He also suggested that I get a second opinion - it won't hurt his feelings if I did.

He said that he thought that stitches from my valve replacement may be causing the SVCs.

Trans-septal, I assume, is considerably less straightforward than the standard ablation, because the probe has to go through a tiny hole in my heart's septum then be curved down to reach and ablate the node that's causing all the trouble.

If any of you have had this type of ablation, I'd certainly like to hear from you.
 

Protimenow

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Another update:

It's 3/10/21.

Although I thought that I stopped the SoB by eliminating certain powdered drinks, I guess I was wrong. My PVCs apparently were responsible - as much as I didn't want to admit it.

Over the past few days, I've also had some balance issues - it's easy to get me to fall.

A trans-septal ablation, below my valve, is scheduled for next Tuesday, the 16th. My electrocardiologist doesn't seem to think that it's that big of a deal - I hope he's right.

This morning, I'm getting my first COVID-19 vaccine injection.

I've been tested for COVID antibodies, and the results were negative.

IF the ablation goes smoothly, I'll check back here with an update.,

(FWIW - after my first set of ablations, my tachycardia was gone - this was the first time in more than 40 years when those damned arrhythmias didn't return).
 

Eva

Miracle Believer
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out of interest have you tried chelated magnesium?
(if yes, no difference?)
Reading this I realized that at the time I wrote that I wasn’t taking any Magnesium, though I had been taking magnesium (400 mg by Nature Made) for most of past years. I stopped after my AF. Now I’m back on it.
Next time I’ll buy the Chelated! Thanks.
 

Beach77

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Protimenow It sure is frustrating going through all that! Hang in there!!

After my On-X valve surgery Dec. 3, 2020, I had fluid around my lungs. It was difficult to breath, even after my tubes were removed. My doctor had an x-ray ordered for my 4th week home. The liquid was getting worse not better as he hoped. A Thoracentesis procedure was ordered two weeks later. It sounded terrible reading what the procedure was. But it wasn’t bad at all! Zero pain! The best part was I felt so much better that day! I could take deep long breaths again! Take care! Ellen

Thoracentesis is a procedure that takes out fluid from the space between your chest wall and lung. This space is called the pleural cavity. The procedure can be done to relieve shortness of breath caused by the fluid.
 

Protimenow

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My wife and I have been binge watching Gray's Anatomy, watching one or two episodes a night. We've gone through 15 episodes so many times that we can sometimes tell what's going to happen in the episode in the first 30 seconds or so, and often come up with the dialog before it's spoken.

They seem to do a thoracentesis every episode or two.
 

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